This qualitative study explores the possibility of superstition as a causal factor in some challenging behaviours shown by older people with dementia.
Keywords: Care of the older person, Dementia, Superstition
Author Irene Carr, BSc, RMN, EN(G), is lecturer in mental health for older people, Institute of Health and Social Care Studies, States of Guernsey.
Abstract Carr, I. (2007) The impact of superstition on behaviour in dementia.
BACKGROUND: This qualitative study explores the possibility of superstition as a causal factor in some challenging behaviours shown by older people with dementia. The author and a second project worker carried out the study in Guernsey, using funding from a small bursary award.
AIM: To increase carers’ understanding of these issues, leading to increased person-focused care for people with dementia.
METHOD: Two project workers informally interviewed a range of local people, particularly older people, to identify local superstitions, folklore and mores. The intention was to develop proactive strategies to predict and better manage associated behaviour and safety rituals.
RESULTS: Some generic UK-wide superstitions were identified, as were several recurring themes specific to Guernsey. These will be used for training purposes with carers. The study identified at least three separate episodes of distressed and disruptive behaviour exhibited by people with dementia that appeared to have a direct causal link to superstitious practices. In addition, numerous other folklore and superstitions were noted that could manifest as misunderstood behaviours in the care setting.
CONCLUSION: Helping carers to identify, predict, interpret and better manage these behaviours has been a worthwhile project. It provides an additional aspect to our understanding of the complex nature of person-centred dementia care.
The proposal to explore superstition and folklore in the care of older people with dementia won the 2006-2007 bursary award offered annually by the Insurance Corporation (Guernsey), which aims to support innovation and good practice in Guernsey each year. This is achieved by encouraging health and social care professionals to bid for a £3,000 award to support small pieces of research, which would otherwise be unlikely to attract mainstream funding. This slightly obscure topic fell into this category extremely well and was deemed to be an interesting - if not a rather unexpected - winner. This article outlines the rationale for the project and methodology adopted by the researchers. It also explores both outcomes and proposals for future development around these somewhat mystical issues that affect care.
Superstition, folklore and magical belief systems have been identified in most cultures, dating back thousands of years (Jahoda, 1969), and are also acknowledged as part of the fabric of modern society (Newport and Strausberg, 2001).
Much research over the years has focused on the psychological theories underpinning this behaviour (Vyse, 1997; Jahoda, 1969; Freud, 1913). Research has explored issues of survival aetiology, conditioned responses and behavioural approaches.
At times, superstitions have been deemed to be relevant only to the poor, the uneducated and/or those living within a pagan or secular society. However, Gill (2007) refuted this notion, and reported that two of the founding fathers of psychology - Freud and Jung - agreed that superstition is deep rooted in everyone’s mentality and certainly not confined to uneducated people.
Erikson (1963) also explored the human need for emotional security, which can be bolstered for some by lucky charms and safety rituals. In addition, other authors, such as Goodall (1997), Moffitt (1996) and Froggatt (1994), have discussed spiritual needs. Superstition and folklore seem to be based on spiritual expression.
These aspects are therefore of particular interest to health and social care professionals wishing to provide a comprehensive and holistic package of care, tailored to meet the need of their unique and individual patient.
Therefore, health professionals with a person-centred approach to dementia care (Kitwood, 1997) have started to consider superstition as a contributory factor in people with dementia’s lived experiences and personal memories. As a result, this is now seen as a possible influence in their behaviour, particularly in behaviour that challenges the health and social care systems (Moniz-Cook et al, 2001; Moniz-Cook and Gill, 1996a; 1996b).
Local interest in this issue was first triggered by witnessing what appeared to be manifestations of superstition-fuelled challenging behaviour from patients in the clinical area.
One specific episode was when a patient with dementia spilt sugar, erroneously thought this was salt and threw copious amounts of sugar over his left shoulder. This could be seen as a fairly innocent mistake, given the level of his perceptual difficulties and disexecutive function. However, because of the nurse’s misinterpretation and attempts to stop him ‘wasting’ food and making a mess, the situation became rather fraught and a little distressing for both parties.
This was quickly resolved once the core motivational trigger had been identified and the patient was enabled to complete his ritual and then move on safely to another activity.
This and one or two other similar episodes prompted me to look more closely into ritualistic behaviours in Guernsey. The island is a special place steeped in mystery, folklore and, historically, witchcraft. This is perhaps unsurprising, given its rich heritage of living with the mercurial dangers of the sea and the vagaries of weather in order to sustain the previously crucial farming industry.
Senior staff nurse Patricia De Jersey was fairly familiar with these concepts and some of the local traditions. I therefore encouraged her to contribute to the project due to her keen interest in developing effective local dementia services and her invaluable local knowledge.
The generation and culture gap
Older people, particularly those from an island background, were largely brought up in a culture of superstition and folklore.
Stokes (2000) suggested that: ‘People with dementia may indulge in actions that are confused continuations of what they have always done.’ It is therefore quite natural that these well-rehearsed self-preservation strategies may still be seen in older people with dementia as much as in other people of the same age.
They may be particularly apparent in times of stress, such as at the loss of an attachment figure (a spouse or other close family member) or when moving into nursing or residential home care (Gessert et al, 2001; Stokes, 2000; Miesen, 1997). They may also occur when people feel emotionally vulnerable, at risk or cognitively overloaded. For example, this could be: during busy mealtimes; while having their personal care carried out by strangers; during visiting times; or while alone at night (Chapman et al, 1999).
However, patients’ younger and/or (as is often the case in Guernsey) non-indigenous carers are not always familiar with the local superstitions and may therefore respond to what they think are strange behaviours associated with dementia. Carers may also fail to support an elderly person to complete their safety rituals, potentially increasing anxiety and leading to stress and misunderstanding for all concerned.
The experience of dementia
We tried to avoid getting caught up in issues merely surrounding loss of cognitive function, as well as the tendency to assume that little can be done to understand or help a person with dementia on a psychosocial level.
Instead, we took the view that it is imperative to recognise that those with dementia experience a whole range of feelings and emotions. First and foremost, each person has a lifetime of individual and unique experiences and memories that contribute to how dementia affects them and how, in turn, they react to different situations.
Therefore, the challenge facing carers is to develop responses and support strategies that acknowledge vulnerability/disability, while also being cognisant of other considerations such as personality, biography and social psychology (Kitwood, 1997).
Superstition in the care context
Rogers (1980; 1961; 1951) first proposed the person-centred approach in relation to counselling and facilitating self-actualisation for his clients by enhancing their own - often untapped - resources. This approach was later adopted by Kitwood (1997), in relation to dementia care, to create a shared understanding of the complexities of improving quality of life for people with dementia. This was achieved by using the Rogerian approach to build and maintain relationships and attempt to understand patients’ behaviour in terms of communication. Each person is responded to as a unique individual and attempts are made to avoid the one-size-fits-all paradigm.
This has subsequently become the acknowledged guiding principle and approach of choice for dementia care in the UK, USA and most European countries.
Brooker (2004) identified four basic and essential elements in a review of person-centred care, described as:
• Valuing people with dementia and those who care for them; promoting their citizenship rights and entitlements, regardless of age or cognitive impairment;
• Treating people as individuals; appreciating that all people with dementia have a unique history and personality, physical and mental health, and social and economic resources, and that these will affect their response to neurological impairment;
• Looking at the world from the perspective of the person with dementia; recognising that each person’s experience has its own psychological validity, that people with dementia act from this perspective, and that empathy with this perspective has its own therapeutic potential;
• Recognising that all human life, including that of people with dementia, is grounded in relationships, and that people with dementia need enriched social environments that both compensate for their impairment and foster opportunities for personal growth.
(Source: Brooker, 2007.)
An understanding of these combined elements is especially important, given that the person-centred approach argues that better outcomes are achieved when carers are able to understand and focus on the person as an individual with a disability, rather than on their condition (Kitwood, 1995; 1993). When trying to understand patients’ attempts to communicate and make their wishes known via behaviour (Gibson et al, 1995), it is perhaps a small step to connect the value of such an approach and a need to understand individuals’ personal belief systems.
With this goal in mind, we have spent much time over the past year getting to know the older people of Guernsey, by using semi-structured interviews and small focus groups in several local nursing and residential homes. This qualitative methodology was designed to access well-remembered childhood rituals, such as the following: having a glass ball in the sitting room to ward off witches; folklore for managing basic health needs such as ‘selling one’s warts’; and avoidance strategies such as not dressing babies in the colour green because it is the ‘fairies’ colour’ and they might appear and claim the baby as their own.
Local ethics committee approval was sought but deemed to be unnecessary, given the nature of the project. However, the project and participants’ potential role in it was explained to each person before the interviews, and their consent was sought in either verbal or written form. Decisions about which format to be used were made by participants themselves, supported by the home manager.
Additionally, a quiz for local health and social care staff was used to elicit more up-to-date superstitions and forge links with local professionals in related areas. For example, a member of the social work children’s service identified the study as something that might be useful in future ‘life review’ work with children, particularly for those living in areas where superstition is widely embraced. This suggested that these children are also likely to experience superstition as part of their belief systems and that this information would be a valuable adjunct to their personal profiles.
A literature search was carried out using medical search engines such as CINAHL, MEDLINE, PubMed and the Cochrane Library and generic ones such as Google. These, on the whole, produced very little.
In addition, we made a valuable visit to the UK, to learn from and share experiences with other researchers in this field. This visit enabled us to explore both the overarching principles of maintaining ‘personhood’ for patients with dementia, and the underpinning psychological theories about superstition which, perhaps, link the two together. For example, operant conditioning - as explored in Skinner (1981) - and psychobiology - discussed in articles such as Monteiro et al (2000) - proved useful in planning the work undertaken.
Using these different modalities to focus the study and to generate the data at a local level has enabled us to not only gather invaluable information about local superstitions, folklore and mores but also to learn a great deal about older islanders and their cultural context.
We have also been able to gain a better understanding of some of the care workers’ perceptions of older people with dementia, discuss ways in which behaviour may be interpreted and start a more open dialogue towards jointly resolving some of the problems experienced.
Some of the superstitions discussed were fairly generic and overlapped considerably with many previously identified in the UK, whereas others seemed to be unique to Guernsey.
For example, it is said that ‘fishermen should never take a currant cake on board the fishing vessels, for fear that the currents will wash them away’.
Although this rather humorous folklore is unlikely to become apparent in the care setting, the following are a few examples of superstitions that might easily be encountered and misinterpreted in the care situation:
• Beds must not be changed on a Friday;
• The foot of a bed should never be placed directly opposite the door;
• Salt must be thrown over the left shoulder if any is spilt;
• People should never cross on the stairs;
• People should always re-enter a building from the same door through which they exited;
• It is unlucky to wear green, cross knives or put shoes on the table.
The list is in fact quite lengthy. This suggests that care workers could face challenges with a person insistent that such safety rituals are adhered to.
One example could be a person with dementia refusing to go into residential care simply because it is a Friday, when it has been carefully planned with and accepted by this patient previously. Or, in the case of a new resident, they may continually sweep shoes off the table when the carer is trying to unpack as putting shoes – especially new ones - on the table brings bad luck.
Given that many people with dementia find it difficult to verbalise their wishes, carers who do not understand the root of these behaviours might easily further frustrate the patient and cause distress for both parties. This was the case in the previously described salt/sugar episode that triggered the initial idea for the study.
We also identified one woman in a care home who was reported to be hearing and responding to auditory hallucinations, when she was merely carrying out her usual ritual of saying a special little rhyme on seeing a lone magpie.
Without an understanding of the basis of this behaviour, carers might easily have responded to this woman inappropriately and perhaps even given medication to manage her hallucinations. The dangers of the side-effects such drugs can produce have been discussed at length by Tobiansky (1995), Patel and Hope (1993) and Kitwood and Bredin (1992).
The following short vignette is an example of successful identification of behaviour shown by an older person with dementia trying to respond to the motivational driver of superstition:
Henry* was a man aged 82 years of age with vascular dementia, living in a continuing care home. He frequently experienced visual perceptual difficulties and would misinterpret marks on the floor as small objects or insects. On one particular occasion while standing in his bedroom having his personal care attended to, he became convinced he could see a penny on the floor. He was so eager to pick it up that he became uncooperative with the nurses attending to him and kept pulling away from them. He became increasingly agitated and repeated faster and faster the phrase: ‘Find a penny and pick it up.’ If the phrase is completed it goes on to say: ‘All day long you’ll have good luck!’
I was fortunately familiar with the saying and was therefore able to support Henry to complete his ritual - and feel lucky for a while - by providing him with a penny to hold in his hand. He was then content to comply with his personal care, and then proceeded to walk around the home until lunchtime smiling and proudly showing everyone his ‘lucky penny’.
*Names have been changed.
We now plan to put these findings together into a booklet for professional carers, and to disseminate both the findings and subsequent recommendations as widely as possible across the island and, possibly, beyond.
We will be providing training and support as required, and assisting others with similar pieces of work in associated disciplines, such as social care for children.
As in many fields of research, it is imperative to continue to investigate and to engage, if possible, in meta-analysis in order to inform and elucidate both our own practice and that of others.
It is unlikely that using these findings will enable care workers to prevent all future episodes of misunderstanding in the local care setting. Moreover, it is readily acknowledged that understanding superstition is not a panacea for all episodes of agitated, aggressive or challenging behaviour, as these can have wide and varying aetiologies. However, it is hoped that this initiative will raise awareness about the possible reasons for such behaviour and help carers to consider alternatives to behavioural containment and/or the often unnecessary prescription of sedative medications.
We also hope to contribute to the growing empirical knowledge and good practice in this often confusing yet rewarding area of care.
It is envisaged that this area of study will be of particular interest in residential care homes and both continuing care and acute hospital situations – that is, environments where patients are not living in familiar surroundings and with people who know them - and their idiosyncrasies - well.
Practical advice for nurses
• Practitioners should familiarise themselves with local traditions and superstitions;
• Nurses should ensure they know patients’ personal histories and how they lived their life;
• Adopt a person-centred approach to looking behind behaviour to find the message the person with dementia is trying to communicate;
• Use a combination of empathy, unconditional positive regard and knowledge based on the three points above; none is sufficient on its own.
Helping carers to identify, predict, interpret and better manage these behaviours has been a worthwhile project. It provides an additional aspect to our understanding of the complex nature of ‘person-centred’ dementia care.
I would like to acknowledge: the contributions made by Patricia De Jersey for help in carrying out the interviews; the Insurance Corporation’s financial support; both local and Hull-based colleagues for their advice and support; and especially the older people of Guernsey who consented to participate in the study.
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